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bad test results...

Hi everyone, been awhile since I've been on here but I really need to talk to people who understand how frustrating things can be with this disease. For the last year or so I've been slowly cutting down on Cellcept, I started at 2500mg/day and am now down to 1000mg/day. My doctor agreed to let me start tapering because my husband and I are thinking about having a baby sooner rather than later and everything has seemed to be going smoothly - I even saw a high-risk ob for a pre-pregnancy consultation a couple weeks ago.

Unfortunately that was my first hint that something was wrong. The high-risk ob visit was great and the doctor seemed happy with all my test results (last one done in Dec 09), the only thing was my bp kept reading really high but they didn't seem too concerned about it since it's normal for people to get higher readings at the doctors office and I fibbed and said my bp has been really good lately even though I honestly haven't checked it much in the last two months since everything has been so good...

I got home and started diligently checking my bp and of course it's been high since then. I already had an appt to see my doctor tomorrow so yesterday I went to get my normal tests done and I just got the result of the urinalysis and it's bad.

I'm so frustrated and my husband is very understanding but I think he also just doesn't get how awful this makes me feel. I had 10-25 red blood cells when normally i only have 0-2. My total creatinine was 112 when it was only 50 in Oct 09 and my total urine protein was 255 when it is normally around 30-50. My doctor has expressed concerns about me tapering off my meds because of the kidney involvement and the fact that I have had flares on lower doses before so he tapered me very reluctantly. The high risk ob was optimistic about me having a healthy pregnancy but my rheumy has been supportive but not encouraging about it and I'm pretty sure these results are only going to make him even more cautious. I'm just really afraid that now that I seem to be having a flare he is never going to let me taper again =(

Hi Wingless,
I'm just popping in here to say I feel for you. I know that having a baby is important to you, but your health is even more important if you want to get pregnant. Be honest with the docs and work with them. A high BP and red blood cells in the urine would be even more dangerous if you were already pregnant.
We all know how frustrating these AI issues can be, and we're here for you. Come to WHL and vent all you want.
I'm in the same time zone as you, since I'm in the Monterey Bay, so I'll probably be here to chat when you are.
Good luck with all this,
Gentle Hugs,
Marla

The Following User Says Thank You to magistramarla For This Useful Post:

I will tread lightly in my response because I was very honest with someone in a similar situation recently and she stopped corresponding with me. Your health must come first...if it's meant to be so be it. Your rheumy is looking out for you...your ob/gyn probably doesn't deal with a Lup patient very often. I was only diagnosed a year ago but am sure I had it for quite sometime. I had a baby at 35..normal healthy pregnancy...had a few little "glitches" along the way. Went into preterm labor 6 weeks early...I have no doubt now i had Lupus then, and no one knew. I had kidney pain/infection that triggered the labor...they think..then my platelets dropped too low to be discharged from hosp..I had 4 trips prematurely to the hospital. I did go full term in the end. My Lup came to fruition when my little daughter was about 5 years old (6 yrs ago) a 5 year old doesn't understand why mommy is laying down to rest for a while...they just want to go go go ! You have to do what is right for you ...but do listen to the medical advice.

Thanks Marla and Andrea for your replies, it helps to know that other people out there understand the utter frustration that comes with having a disease like lupus...I know that it will do me and my potential baby no good if I get sick during pregnancy so I'm definitely not offended by your advice to follow my docs advice.

I had my doctor appt today and it pretty much went as expected, I think my rheumy knows just how incredibly disappointed I am because he did not say I have to increase all my meds just yet. He wants me to see a nephrologist first and possibly get a kidney biopsy. I will go see the nephrologist but I'm pretty sure he is just going to say the same thing as my rheumy...I've had this disease long enough to know what my numbers mean (nothing good) and that the only thing to do at this point is to go back to what was working (the meds). I don't think I will do the biopsy since I'm pretty sure the results of it won't be positive enough to indicate that even though my kidneys are leaking protein I can still continue to decrease my meds (my rheumy said that in certain cases even with protein leakage its possible that a biopsy will reveal the type of kidney involvement that doesn't require too much intervention - I don't think I'm lucky enough to be in that boat considering I already had one biopsy that showed I had the kind that does require aggressive treatment...he said it can change but again I just don't feel that will be the case). I really would rather not get another biopsy and all that it entails so I will probably just go back on the meds after doing a retest in a couple weeks...

Even after five years, I guess there is still this part of me that can't accept it. I can't accept that I can't just finish a course of medication and be "cured." Part of me is always like, I can just go off my meds, I've been so why won't I be fine if I go off the meds (crazy I know). Having a biological child is something I would really love but ultimately I want to be a mother and I have always wanted to adopt regardless of whether or not I had biological children. I guess I just feel really down and like a failure because I know my husband really wants biological kids...we've talked about adopting but he has always said that no matter whether we adopt or not he really really wants bio kids too. Luckily we are still relatively young so hopefully what's happening now is just a bump in the road but part of me is starting to really be afraid that it may not ever be possible. Maybe I'm getting ahead of myself...hopefully...but I'm just so frustrated with myself and with this disease.

Thanks for listening though guys...I don't really know anyone in real life with lupus and even though I have a great support system it never feels like anyone *really* understands the way I know you guys do.

Hi Wingless,
I know that having kids is an important part of life, and I know very well that they take lots of energy! You said that you are young, so have hope. They are researching some promising new drugs for Lupus right now. Who knows? Perhaps one of them will be just what you need, and then you'll be able to get pregnant. Meanwhile, would it make you feel like you are achieving something if you start the paperwork for getting qualified to adopt? I've heard that it takes quite a while. Maybe by the time it all goes through, you'll either feel ready to adopt, or that new drug will make you ready to have your own!
Have hope, sweetie.
Gentle Hugs,
Marla

Thanks for all the great suggestions and the hope! I do hope that something will happen and suddenly lupus won't control my life anymore...that would be awesome...My husband and I did have a serious conversation after today's appointment and I'm starting to feel like maybe this is the Lord pushing me more towards adoption, at least for the time being. We basically decided to set a timeline for ourselves that goes something like...continue trying to get healthy...search for a home (we are renting a small studio apt right now, not really enough room to bring a baby home anyway) once we do find a home we love and get settled in we will start seriously looking into adoption. It does make me feel a lot better to know that no matter how my body might try to trip things up along the way I can have a plan for moving forward. But I do pray that I am able to fulfill my husband's desire of having bio kids at some point down the line....I am only 27 right now so I'm hoping at some point during my dwindling fertile years my body will stop being such a pain in the you know what and let me have babies...

Hi wingless -
Just wanted to let you know I think it takes an enormous amount of courage to put ones needs/wants on hold in order to take care of oneself....so difficult. I truly feel for you and totally understand your frustration with this disease...I am hoping youre kidney issues resolve soon and youre back in good health.
What a gift to this world to have a young couple want to open up their hearts to a child who needs them so much - I admire that so much.
Praying you are better soon wingless -
Lauri
PS - I had not even married my husband at age 27!! LOL - You are a young woman with a whole life ahead of you....God bless you both!

For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

Hi Wingless,
My daughter is on the same path. She is 30 and has a son from her first marriage, but now she and Steve truly want one of their own. She has Poly-cystic fibroid syndrome (another AI issue!), so she is having a rough time getting pregnant. They have also set up a time table. They are having a new home built, and will move in sometime in May. They are going to keep trying, but if it doesn't work after a year, they plan to adopt a little girl, perhaps one from China, where so many little girls are unwanted and need homes. Grandma here is hoping that right after they bring the little girl home, Hillary will find herself pregnant, and I'll get an extra grandchild!
I'll keep hoping for both of you.
Gentle Hugs,
Marla

The Following User Says Thank You to magistramarla For This Useful Post:

Wingless..you sound like you have focus and a girl with a plan. I have to tell you ..after my first child I could not get pregnant and we didn't think or plan for more children...we eventually became foster parents...it was great. In 1997( from a car accident in '95) I needed neck surgery, so we did not foster after that...I got pregnant 10 months after my neck surgery!!!! My girls are almost 12 years apart...It was the most exciting thing that had happened to me in years at that point. I guess what I am trying to say is, that gift/miracle came to me when the time was right.

Thanks again to all of your Lauri, Marla and Andrea. I am a person who always has to feel like I have control and a plan so when I first heard the news that things weren't going according to plan I sort of just freaked out. I hope things start to feel better day by day, especially once we are able to really put our focus on adoption.

Andrea, thank you for your story. It is so helpful to me to hear about people who have struggled with similar issues and have come out of on the other side with miracle children to show for it! I hope that can be me someday...

Marla, I'm sure you are in the same boat as my parents hehe, they would probably love nothing more than to get a couple of extra grandchildren out of our situation right now =) I mentioned that we are looking into adoption and they were like oh well then maybe you'll get pregnant all at the same time and we'll have two at once!

Lauri - Thank you so much for your kind words and your prayers, I can really use a lot of those right now!